Johanne Powell RTÉ RTÉ

A WEXFORD MOTHER of a profoundly disabled woman has described her frustration at her life of care dedicated to her daughter.

Johanne Powell gave birth to her daughter Siobhan in 1984. Siobhan has the rare genetic disorder Ring Chomosome 8, and has been seriously disabled all her life. She cannot walk or speak, and requires constant round-the-clock care, which is performed by Johanne and her husband Alan.

In a brutally honest interview with the Irish Times, Johanne had previously described how she is “bored” with the job of caring for Siobhan, and how she doesn’t “want to do it anymore”.

Speaking to Ryan Tubridy on RTÉ’s Late Late Show last night, Johanne said that the feelings she has about being a full-time carer are ones commonly felt by people in the same position but which “people are afraid to say out in public”.

“The things I’m saying now, how I’m bold, I’m depressed, I want more, a life for myself – people are afraid of being judged,” she said.

I can understand that. I’m not talking for everybody, everybody doesn’t feel like I do, this is how I feel, but it’s also how a lot of us carers talk when we meet up.

“Unrealistic notions”

Powell spoke of the “unrealistic notions” a woman has while pregnant as to what kind of child she will have.

“You think they’re going to be Olympic swimmers with university degrees and everything you can have and you know, I got a daughter that can’t do anything,” she said.

I will never have grandchildren ever, I come from a big family, I’d love to have more children, but we couldn’t have more, it just didn’t happen.

I would love to have plenty of grandchildren to spoil and do things for, and at the same time you grieve also for the child that you thought you were going to have.

The Powells, from Fethard-on-Sea, Co Wexford (though Johanne was born in Norway) have been looking to move Siobhan to a long-term residential placement in their locality, though thus far without success. The waiting list for such placements in Wexford extends back to 2007.

“It’s not that you want away, because you don’t,” she said.

You love her, but at the same time there’s a child there that you thought you were going to have and that you never met. I would love to meet the child that Siobhan could have been if she didn’t have the chromosome disorder.

“I do think about that child, yes I do,” she added.

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